I got a call on my way to the first Scottsdale Bible MOPS
meeting on Sep. 4. I was scheduled to be a greeter in the parking lot and had
my cute new t-shirt on. The call was from my midwife office saying that the results
of my genetic testing were in and I needed to come in right away for the
results. I asked if they could be given to me over the phone and she replied, “No.”
My next words were something I thought I was saying in my head but they came
out loud, “So the results are bad.” She was silent.
I dropped Weston at the nursery and tried to pull back tears
as I greeted all the new moms that morning. I told two friends about my call
and made it through that meeting. When it was time for sharing at our tables,
we were supposed to talk about something we needed courage for. I couldn't
bring myself to bring it up yet because I didn't want to believe it could be
true. I knew my chances were a little higher for a Spina Bifida child, but the genetic
test checks for several disorders and I had no idea what it could be. Keeping
calm was the only thing I could do. I also kept reminding myself that these
tests are usually false positives and everything is fine.
Bryce took the afternoon off work and we went to the doctor’s
office together. I heard one midwife say to another in the hallway, “I’d like
to come watch you give this news.” Both women came in and said, “I’m sure you
already know that your screening came back positive for Spina Bifida.” I didn't
know this for sure yet, but now I did. She explained that these are almost
always false positives but the level 2 ultrasound would show more. I asked if
there is a specific number correlated to these results and she said no there
isn't; it simply says “positive.” I requested a copy of these results.
As we lay in bed that night, I began looking through the
results and there were numbers linked to the data. I don’t think the midwives
work with these scenarios often. It only took a quick google search to see that
my AFP levels, which is the SB indicator, was extremely high. Far too high to
be a false positive. My heart sank but Bryce told me to stop researching.
The next morning I held my phone in my hand and called the
Perinatal office the second it was 8 am. We were scheduled to have a week long
trip to Chicago to see friends (without Weston) only a few days later, and I
knew I could not go on this trip without knowing for sure. I begged them to
squeeze me in that day, and after over a dozen calls back and forth, we were
scheduled for a level 2 ultrasound at 1:30 pm. Again, Bryce took time off work
and met me at the office. I had nerves about what was to come, but I still felt
so positive. I had just canceled our upcoming gender reveal party because I knew
we would find out the baby’s gender in that moment. Even if the news was good
about the SB, I wasn't up for hosting a party.
The ultrasound tech looked at the baby’s spine right away and
said, “Rest easy dad. You look so nervous. The spine looks perfect. You can
take a breath now.” I have never felt such relief and gratitude to God in my
life. We spent the next hour getting to watch our baby wave at us, dance around
and learn we were having another boy. We had already decided we would name him
Miles Gabriel. As she scanned over each body part, I said to her, “That’s the
most perfect spine I've ever seen. That’s the most perfect brain I've ever
seen.” We laughed and joked and I’m so happy I had the special hour with my
son. I would never trade that hour. I got to meet him, knowing he is perfect
and getting acquainted with him just as he is- my son, not a disabled person.
The tech left us alone in the room for about 15 minutes as
we sent texts to family, overjoyed to be having a second boy! It was a really
happy moment. I was getting hungry and wanted to get out of there to get lunch.
Then the doctor came back in the room and asked me to get back on the table. I
thought nothing of it. She probably just needed to double check everything. She
looked for about 5 minutes, asking me many questions about my sister’s Spina
Bifida. Where is her lesion? How disabled is she? Shortly after those question
she said it, “There is a Spina Bifida.” I just stared at her. I must have heard
wrong. She saw my face and repeated, “Yes there is.”
It felt like a wave of heat started in my head and washed
down my body. My throat closed up. I can still feel the physical reaction.
Bryce grabbed my hand. Thank goodness for shock because over the next ten
minutes she showed us the opening on the baby’s back and the malformation in
his brain. She said the ultrasound tech had missed it but she was able to see
it in his brain and some indenting on his forehead. I was able to calmly ask questions. One of my
first, does he have SB Occulta, the mild version? No, he doesn't. I already know so much about SB that I didn't
have to ask many questions. Bryce was silent. She sat me up on the table and
talked about the many options we have moving forward. She said we can discuss
those options. I think I just stared blankly at her. Finally she said it.
“Do you want to continue with the pregnancy?” You know when
this is offered you are dealing with something serious.
“Yes,” I said very sure. I didn't even need to turn and look
at Bryce. I knew his answer. She said that is great news and now we know which
direction to go from here. Next we met with a genetic counselor with a thick
French accent and I could barely understand her. She asked a million questions
about our family and medical history. She said this happened because of a
combination of environmental and genetic factors, and before I would have known
I was pregnant. I asked if my Diabetes played a role and she said, no. My blood
sugar control is so good that my chances would be no different than anyone
else. After this, she explained Miles also has cysts on his brain that could be
benign or could be a sign of a serious chromosomal defect called Trisomy 18 and
he probably wouldn't live long if he has this. The doctor had not mentioned
this. I could get this test, that test, more tests. I don’t remember what all
of them were. The doctor came back in the room and said I may qualify for the
inutero surgery that is done before the baby is born. We said we were
interested in this. She then said it is unlikely they would accept me because
of my Diabetes.
Oh, there it is. Diabetes coming to harass me again. I've
never hated Diabetes so much. I never wanted it to affect my children.
We needed to meet with a pediatric neurosurgeon, urologist,
orthopedist, physical therapist, occupational therapist, blah, bah, blah. The
baby won’t have bowel or bladder control his whole life. He may not walk. His
spinal cord is tethered in the womb. He had enlarged ventricles in his brain
indicating hydrocephalus. I already knew what these things meant but hearing it
explained for your baby makes the words sound different. I grew up witnessing
what this life is like through my sister, but I was never her caregiver. It all
sounded scarier now.
Finally, the counselor and doctor could see we needed to digest
this. She said we had just been given a lot of really hard information and we
need to go home and process it. I would be hearing from Phoenix Children’s
Hospital to set up some consultations. I used to care about what all of this
would cost, but everything seemed trivial now.
Bryce and I had driven separate cars and agreed to meet at
his mom’s house to pick up Weston. We didn't say much in the parking lot, just
hugged. I called my mom and told her. It was her worst fear come true. I was
still calm. No crying. She stayed calm too and took a deep breath and said, “Ok.
Well we will deal with this. I’m so happy you believe in life. He will be a
great kid.” We were both in shock at that point. Bryce and I explained what we
could to his mom. She teared up. We told her we would be canceling our Chicago
trip.
On the way home I was in a daze. I stopped to get gas and
accidentally locked Weston, my phone and my keys in the car…in the Arizona
heat. A truck driver let me use his phone and the police and fire department
came and broke into my car. As the police officer questioned me, I thought for
a moment they might take Weston away from me. It was not a good day.
We walked into our quiet house and it looked grim and sad.
Bryce and I sat on the couch, crying and holding each other. We held Weston. We
just cried. It was the darkest moment of my life. We went for a nightly walk like
we normally do and said all our fears. I’ll never forget what Bryce said. “All
I ever wanted was a normal life.” We both knew nothing would be ordinary
anymore. People like to remind us that normal is relative and boring but in a
moment like that, normal sounds really really nice. Would we travel? Would
anyone watch our kids when there are extra needs involved? What will happen to
our marriage? To Weston’s life? Will we go bankrupt with medical bills? We
already can’t afford my Diabetes costs. Will Bryce’s career goals be halted? Will
we have more children?
I didn't sleep that night. Not one moment. Anyone who knows
me knows that I like to sleep and I can do it pretty much anytime. I finally got
up and researched Spina Bifida. I wanted to find a magic blog or article that
told me everything would be ok. I didn't find that. I wanted to pinch myself
and wake up from the nightmare. I was awake. I wanted to turn back time to 4
months before and change whatever I had done the day my son’s neural tube
formed. Did I take a hot bath? Was it the week I had the stomach flu? Did I
forget a prenatal vitamin? Did I eat too much dessert? I’m supposed to create a
safe environment for my baby to form and I failed. I knew that these things
aren't truly my fault but depression does an interesting thing to your mind. It
makes it wander into unsafe places that only God can pull you out of. My
thoughts were admittedly dark that night.
